Health Care

A look at symptoms, diagnosis, treatments and current MDA-supported research into this complex autoimmune disorder

posted on June 15, 2015 - 1:01pm
In recognition of June being National Myasthenia Gravis Awareness Month, MDA is examining the disease from several perspectives. This article offers an overview of signs, symptoms, diagnosis and treatments for myasthenia gravis (MG), as well as information on drugs that people with MG should avoid.

A nurse and genetic counselor, Trout discusses the diagnostic process and how she helps families with education and support

posted on October 3, 2013 - 9:07am
Quest Vol. 20, No. 4
Nurse Christina Trout Christina Trout is an advanced practice nurse specializing in pediatric neuromuscular disorders and genetic nursing. She's been providing genetic counseling, as well as general education and care coordination, to families with neuromuscular disorders at the University of Iowa since 1993.

The daylong, MDA-supported conference held Aug. 24, 2013, focused on all aspects of Becker muscular dystrophy; videos are now online

posted on September 11, 2013 - 12:15pm
The 2013 MDA-supported Becker Muscular Dystrophy Conference, held Aug. 24 in Baltimore and co-hosted by MDA and Johns Hopkins Medicine, was "high-energy" with "phenomenal" presenters, says Annie Kennedy, MDA's senior vice president of advocacy, who attended and helped organize the meeting. Some 130 people attended in person and many more, including some from outside the United States, attended...

The annual BMD conference, held in Baltimore and streamed live online, is centered on the theme ‘optimizing the lived experience of BMD’

posted on August 22, 2013 - 12:31pm
MDA and John Hopkins Medicine will present the 2013 national Becker Muscular Dystrophy Conference Saturday, August 24, in Baltimore. Free to all participants with BMD and their family and friends, the conference can be attended in person or online.

MDA grant will support a study of prednisone in 25 boys with Duchenne muscular dystrophy who are less than 2½ years old

posted on August 20, 2013 - 5:00am
Pediatric neurologist Anne Connolly has received an MDA grant to study the effects of prednisone on Duchenne muscular dystrophy in very young children. MDA has awarded a grant to Anne Connolly, a pediatric neurologist at Washington University in St.

MDA has supported a total cost-of-illness study for three common neuromuscular disorders that may affect drug development and social and economic policies

posted on August 14, 2013 - 4:00am
"We now have numbers to point to," said Annie Kennedy, MDA's senior vice president of advocacy. "It's not just a back-of-the-envelope calculation anymore.

It will take time, organization and persistence, but in the end, chances are good the bill will get paid

posted on July 1, 2013 - 9:17am
Quest Vol. 20, No. 3
“Frustrating” is how people with neuromuscular diseases describe health insurance companies. Essential treatments are not paid because insurers say they are medically unnecessary. Then, after waiting weeks for responses to letters, and hours holding on the phone, the hospitals, doctors and insurance companies point at each other, but expect you to pay the bill!

Investigators are seeking people with Becker muscular dystrophy to participate in a patient registry and potentially in a gene transfer trial

posted on July 1, 2013 - 5:00am
Update (Nov. 19, 2013):Enrollment for the follistatin gene transfer trial for patients with Becker MD is complete. Enrollment for patients with sporadic inclusion-body myositis, however, is not complete. Investigators remain interested in recruiting participants with either BMD or sIBM for the outcome measures study, also known as the patient registry.